Slow down you beast!

[ruthiep]

I'm shocked and devastated at my husband's marked progression the last 4 months! He was doing so good in January that his neuro at the ALS clinic in Huntsville double checked his records to make sure he "actually" had ALS. Fast forward to April/May and his day-to-day walking with his AFO's is pure tortue to watch. His weight loss is scary and his fatigue level has increased dramatically. At this rate, looks like he may completely bypass a cane, walker, etc. and go straight to a scooter---so incredibly frustrating for him. I expect they will pull him off his Rilutek at the next appt. in July as his liver functions had already become elevated....uggh! He finally had to put his bass tournament fishing boat up for sale as he can no longer get it in and out of and of it-- another heartbreak that I wish he didn't have to go through! Praying that this damn beast of a disease will slow down and that Scott's progression will hit a plateau quickly! Hugs and prayers to all!

Ruth

 

[retiredmus2010]

Oh my~~~~ I am so sorry to learn of this. One: you may want to begin including ENSURE drinks for energy and added calories. 2nd a power wheel chair is better for ALS patients than a scooter. Check with your als clinic in your area. You will be amazed at his energy level when he doesn't have to waste so much effort in walking and not falling.
I send you both strength and ask our Lord to preserve the precious energy that you both need.
G.

 

[cervus]

ALS is evil, Ruth. So sorry it's progressing this way. Thinking of you. Yasmin.

 

[laurel]

Ruth I am so sorry to read about Scott. I will be saying some prayers for him. Sounds like he could use some calories pumped into him via some very fattening cream sauces, puddings, some quiches with lots of cream etc. I am thinking about you two and I hope my prayers will help slow things down. Maybe he should be coming off the Rilutek since his liver enzymes are high--July is a long ways off.
Laurel

 

[notgivnup]

Ruth,....Soo sorry it has progressed so quickly, PWC is mush better for him I agree. I thought i needed to sell my boat for not being able to get in but my son carries me over the side and I have seen one person with ALS have a lift mounted onboard so he could still get out and fish. Just a thought. Where there is a will there is a way!... Thinking and praying for you both. {{HUGS}}

 

[Danijela]

Sorry to hear about these developments.

We went with the scooter first and L managed it for about 6 months. W/c will be liberating but is is another 'sign'/milestone on this journey.

I know everybody is different but when everything starting going with L, his breathing deteriorated too, so try to keep an eye on that.

Wishing you all the best, Dani

 

[Danijela]

...forgot to say that the weight loss in not always due to bulbar weakness and inability or hard work eating by mouth. In our case it was due to respiratory decline which resulted in feeling full. D

 

[DeansWife]

Aww, Ruth, I'm so sorry to hear this news. Right now I can only imagine the feelings you are having knowing that I to will face them one day - scary. My prayer is that Scott will regain his strengh and this is a temporary setback. {{Hugs}}

 

[HelenL]

Ruth, sorry to hear of hubby's decline, I also would stop the Rilutek, but then, I never started it to begin with. I have been using the scooter for over a year, and started using it full time when my arms got hurt trying to hold my errant legs up. My "core" is also weak, so it was a relief to zip around the house in the scooter instead of struggling to hold on for dear life to the walker. I rarely us my afo as it doesn't seem to help me stay up (long before the scooter), and sort of pitched me forward at times. I have a loaner pwc and am waiting for mine to be processed, but have to say that though it'[s morecomfortable, I feel better in the scooter. I take walks with the dog in it, and go downtown on short errands with it.

Is your hubby taking any supplements? Everyone is different, but I think some of what I take may actually make a difference. Sending you a hug as
well.

 

[rachelg]

So sorry to hear this. My husband found his PWC a relief once he got used to it - he could whizz round and save his precious energy for walking around at home. Selling his boat is no doubt devastating, my husband cried when his precious motorbike got sold.

This disease really is a beast.

 

[momap53]

So sorry to hear this. We'll keep you guys in our prayers. I found the PWC to be a relief after the struggles and fatigue associated with walking.

 

[joni51]

Ruth I hope that Scott's progression slows down, Hugs to you today!

 

[Barbie]

Ruth, I understand how shocking this is to you...so unfair to everyone involved. My husband got a scooter before a chair--he used it for a year--he was like your husband when he got it and probably could have used a chair a little sooner. He loved the scooter because it made him safe in the house since I work and he was alone. it was also easy to transport, inexpensive and didn't have a stigma like a chair. look in the used equipment and on line for a good deal. once we got him on the scooter--no falls so that was a relief.

And Progression can slow down, I know from experience. don't give up hope.

 

[panguinjen]

Ruth,
I'm sorry! This disease is beast! Keeping you both in my thoughts!

Jen

 

[ruthiep]

Thank you all for your words of wisdom, thoughts and prayers, it is appreciated more than you will ever know (as the tears well up)! We finally hit a milestone last night.....Scott laughingly told me that I "sucked" as a physical therapist and I wholeheartedly agreed--afterall I can only learn so much on YouTube about how to massage and stretch his legs and arms! I admitted defeat and told him that I was gonna have to have someone come into our home and teach me the ways to help him. He actually agreed....shocking! He FINALLY agreed to allow me to contact our local ALS representative/coordinator to come and do a home visit (she's contacted me multiple times requesting to come visit, but he and I were both resistant - denial is a horrible thing). That being said, I'll be contacting her tomorrow and look forward to some outside help in figuring out the best way to help and care for Scott as he progresses! Again, many thanks to each of you! Sending big hugs, thoughts and prayers!

Ruth